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Crohn's Disease Forum » Parents of Kids with IBD » Revellex Infusion - help?


04-03-2013, 02:58 PM   #1
Robs a
 
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Revellex Infusion - help?

Hi Everyone, need some advice/assistance as usual. My 15 year old son had his 2nd infusion of Revellex (Infliximab) yesterday. After the first infusion all was well, he was slightly tired and a little nauseous but by the 2nd day after the infusion he was feeling fine. In the past two weeks his appetite has increased and he has had so much more energy. For me it has been incredible seeing him like this. As I said his 2nd infusion was yesterday and although he feels fine today he has had a lot of gas (very smelly) and this evening he had slight D. He does not have any cramps or other symptoms. Could the gas/loose BM be as a result of foods he may have eaten or could this be the start of something else. He has also , over the past two weeks, been weaning himself off Budesonide and today was the first day without any. Would so appreciate advice from anyone who may have experienced somehting similar after an infusion. Thank you!
04-03-2013, 03:33 PM   #2
Johnnysmom
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We have not done Infliximab but the meds my son has taken there has always been an up and down period after things have gotten better. Our nurse has always said that it is just his body adjusting to the new meds.

I would call and let his GI know about it as it might be the Budesonide and if it continues you might want him to go back on it.

I have found that everything involves trial and error with this disease. My son has been in remission for over a year now and we still occasionally have days like you are describing. They seem to go as quickly as they came!
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Dx Oct 11 2011 Crohns disease
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04-03-2013, 05:16 PM   #3
my little penguin
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DS was on remicade . He would have d within 24 hours then be fine or sometimes c
We just referred to it as a reboot then his system was good .
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04-03-2013, 05:49 PM   #4
izzi'smom
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We didn't have any change in symptoms while on Remicade, but wanted to send some hope that things improve!
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04-15-2013, 01:57 PM   #5
Robs a
 
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I am feeling very concerned about my son today and am hoping to get some info from those who are going down the Infliximab road. My son had his 2nd infusion on the 3rd of April, still on the loading dose. His next appointment booked for 30th April. Over the past 2 days he has not been feeling great. His long standing allergy issues ( post nasal drip, sore throat, itchy eyes, dark rings under his eyes etc) have returned and I am not sure whether his listlesness is due to allergies or whether the Infliximab is not doing its job. He is now completely off Entocort which was very helpful in controlling his allergies. How would we be able to judge whether the Infliximab is not working since he has never really displayed typical Crohn's symptoms, no diarroea, blood in stool etc. Low Iron, low energy and anaemia have been the things he has had to deal with. I also feel so worried that perhaps the Infliximab does not agree with him and am fearful about the next infusion which will be done in the GI's rooms. Have read some frightening stories of what happens when things go wrong during the infusion. Any suggestions about what to look out for? Help help help???
04-15-2013, 08:01 PM   #6
Tesscorm
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I don't have enough experience with remicade to give you any good advice.

Stephen just had his 3rd loading dose on Friday. I do remember that he had 'allergy' type symptoms too (nasal drip, sneezing, etc.) off and on a couple of times... I was even worried as I think it ran into his second dose (but, we checked with nurse before going ahead with infusion).

Stephen is similar in that he doesn't often have the obvious crohns' symptoms but, in our follow up today, his blood results (taken just before Friday's infusion) showed his CRP has dropped and his HGB had increased slightly. As far as future tracking, his GI is going to do an MRE in August and will do scopes again sometime over the winter (as well as the usual blood tests).

Sorry I can't be of more help...
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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04-15-2013, 08:13 PM   #7
my little penguin
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things to keep in mind if your childs allergies are "flaring" then sometimes the crohn's follows suit since the immune system gets overloaded.
Does your child see an allergist?
IF so do you have a plane for when pollens are high?
WE found reducing Ds's allergies and getting them under control by adding allergy meds
also helped his crohn's.

As far as Remi reactions- my son has had two mild reactions - second one while pre treated with steroids and benadryl prior to the infusion - so no more remi for him.
Most infusion clinic are aware of what to look for and GI's tend to pre order meds so they can be given quickly in an emergency.
04-16-2013, 05:03 PM   #8
Robs a
 
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As always thank you for your valuable advice and comments. Tesscom am so pleased that Stephen is doing well and that his CRP has dropped. Great news! my little penquin thank you for your comments re allergies, have spoken to our GI who set up an appointment immediately with an allergy specialist that he works closely with. Off to see her tomorrow, as well as our GI who will hopefully give me some clarity on what is going on with my son. Feel so sorry for him as he was feeling so amazing after the first infusion and was sure that this was the medication that would solve "everything" for him. His barometer for feeling well is based on his performance on the soccer field. Has always been a great player but in the last year and a half he struggled so much with energy issues. AFter his first Revellex infusion he played in a Soccer tournament and he stunned all of us with his skillfull and energetic game. Even his coach could not believe this was the same kid from last season. I know that as parents we need to let our kids kind of take ownership of their illness, making them stronger and more empowered along the way, but hell what a difficult thing to do. Instinctively just want to take over and try and solve the problems. Guess everyone feels pretty much the same.
04-17-2013, 06:32 AM   #9
crohnsinct
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Sorry so late to the discussion but fwiw my daughter stayed on prednisone through the loading doses and probably for an additional 3 months. Early on every time we tried to wean her symptoms would come back so we went back up a bit. We yo yo'd like that for awhile until Remicade could finally be used alone and we had a dose and schedule worked out. Eventually we just had to take her off steroids and do a course of EN to help the REmicade out and ever since then smooth saililng.

I hope the docs were able to help you out today.
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
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Entocort
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04-17-2013, 08:16 AM   #10
Tesscorm
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Good luck at your apptmts today. I hope you get some answers and guidance!

04-17-2013, 08:51 AM   #11
Bubbly
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Just wanted to wish you well for today.

My 14 year old son is due his 3rd loading dose on Monday, we have been lucky that he hasnt really had any side effects, mind you lots of smelly gas and burping alot!! Did mention these to the hospital but nope hadnt heard of them as a side effect!!

My son has improved, slowly but in the right direction, he takes azathioprine alongside it, which he has just restarted after bloods showed low white cell count, so it was working to well for him, bloods taken on Monday during infusion will hopefully show everything working well and hat we can continue with this treatment.

Look forward to hearing how things go :-)
04-17-2013, 10:05 AM   #12
Robs a
 
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We had our GI appointment today. He said he really did not think that my son's current condition has anything to do with the Remicade. More likely a flare up of allergies. So off we went to recommended Allergy Specialist. She was great, very helpful and informative although nothing really new in this department, kind of heard it all before over the years. But we are back on track with allergy meds as from this evening which will hopefully normalise things. Next Remicade infusion scheduled for the 30th April, holding thumbs!
04-17-2013, 12:41 PM   #13
Brian'sMom
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Robs a, I can relate with wanting to solve it! Crohns just doesn't work like that for us moms. Hang in there. I remember being scared during the induction period of Remicade. They will take good care of you in there. I think us moms just want a medicine to 'cure' our kids. They all come with sides they have to deal with. For what its worth...my son has had a sniffly nose the whole time he's been on biologics. Not sure if its from them or just from the crohns.
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symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
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Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
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